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Hi Bank, I too am a fNHL person. I chose treatment following diagnosis (radiation) which was not successful and have been on watch and wait for the last two+ years.

My biggest hurdle is going to be balancing my family, work and cancer.

One of the reasons I appreciate this approach to managing my disease is that it allows me to balance family, work and cancer on my terms. I have a regional sales job that demands quite a bit of travel, volunteer extensively in my community and am very involved with my daughter's activities. My wife and I are best friends and partners in the volunteer stuff, as well. My time for additional treatment will come but it is my plan to defer that until the disease requires it since there is so little proven information that early intervention actually will make a difference in the outcome. Some good things seem to be developing and some researchers are hopeful that the developing treatments may be game changers. As yet, there is no actual proof of that so I choose to wait in the hope that things will develop to the point of being definitive when I do need additional treatment. As my friend David says above, it can be very difficult to make choices if you are low grade, low stage and I am at the other end of the spectrum from him. I appreciate every day of watch and wait that I get because it allows me to be independent of all the treatment side effects that can present once you go down that path. This was the right choice for me which in no way means it is right for everyone. In fact, one of the reasons cited for starting treatment before it is medically indicated is that the patient requires it for peace of mind. Since I already have that, it doesn't apply in my case.

Do get us your data when you can and we will do our best to be of help. fNHL is a disease you live with more than die from so there are clearly worse things to have in life. Many.

Good health,

kermica

When the world says, "Give up," Hope whispers, "Try it one more time."
~Author Unknown

Age 66
Follicular lymphoma diagnosed August 08, Stage 1
2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
Restaged to Stage 3 May 2010
Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
Significant progression detected in PET scan - December 2012
Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.

I keep reading everyone's history. My concern is when/if the cancer comes back. I have insurance thru my employer. I also have a cancer insurance policy thru American General. AG sent me a claim form in the mail already, i've had the policy almost 20 years. I need to keep my job and my health insurance as long as possible. Once/if I go on long term disability I know I can keep my current health insurance policy at $1200 a month, family rate. I thought that was very high for a healthy person but when I figure in the lymphoma treatments I figure that is gonna become more and more affordable. My life insurace policy thru my employer is also going to go away when I retire early. Right now I have about 5 months worth of sick and annual leave available I can take as needed. I also work a 12 rotating swing shift. This means that I can get treatments during the day during the week and work nights and weekends. I have a desk job. Continuing to work will also extend the number of off days available as time goes by. I gain 6 hours of leave every week. There is also a leave transfer program available that I can use if needed. It basically means that co-workers can donate me leave if I it looks like I may return to work in a reasonable amount of time. I am blessed compared to others I am sure, But I am still scared for my future and my wife's. She has no job, insurance, retirement, ect. other than thru me. I don't want to leave work until I have to. I have so much running through my head about how this all is may progress. I could not sleep last night and all day long we had family and friends wanting to talk about the cancer and wanting to relay some story about cancer and how somebody they knew died quickly after finding out. Stressful.

Age 52
Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
Remission 2-17-2012
Rituxan treatments start 4-25-2012, once every two months for two years
Learning as I go.

Thanks so much. My biggest hurdle is going to be balancing my family, work and cancer. I am young and strong. I truly believe I can beat this. We want to stay positive. I guess the biggest disappointment for me right now is the realization that I will have to deal with this till I die. I had been thinking that I could beat this and move on. No such luck this time. I am already glad I decided to come to this forum, I'm truly going to need to talk to people that are living it also. As time goes by I will know more on how to describe my specific cancer situation.

Bank,

First off, don't start making too many doomsday assumptions. There are a LOT of variables here. Yes, you will have to deal with this for the rest of your life, but not necessarily in the physical sense. You may not need treatment for years (if you decide observation over an early offensive attack), and you may go years and years after treatment with no sign of disease. And nobody can tell you really how long that will be - could be 3 years, 5, 8, or longer. There are many people that I have met (on this and the Web Magic board and Facebook support page) with FL who have been NED/free of disease for over 10 years - some longer than that even. Those folks certainly don't feel like cancer patients, but will always have to cope with the anxiety of it lurking. That is something we will not ever escape, but that is just the nature of the beast with FL (or any cancer really). You can't escape it, but you can learn to live with it. I met one guy who was disease-free for 24 years (TWENTY-FOUR) before he "relapsed." Think how long that is...

Ideas and dogmas about this disease are changing every day, which you need to be aware of. For instance, at the most recent Weil-Cornell conference, many of the top lymphoma researchers are now saying that the old strategy about "watching and waiting" for treatment and how early treatment doesn't impact overall survival is really applicable to chemo only. Myron Czuczman, the Chief at the Lymphoma/Myeloma Service of Roswell Park Hospital (who has been more conservative in the past about doing early treatment) was more convinced that we should ditch the palliative care approach (watch and wait) and that for patients with low tumor burden, no B-symptoms and normal or near normal LDH, that Rituxan monotherapy is the way to go and go early. The mood and tone today seems to be changing quickly. Just last December, many of these doctors were still saying over and over again that there was no hard data to support early treatment for FL, and that it still did not effect what they call "overall survival." One thing you will figure out (if you choose to immerse yourself in this, and all of its controversy), is that the main reason researchers say this is because patients from those studies are still alive - those who were on watch and wait and did not do early treatment, and those who were on watch and wait and did do early treatment. It is difficult to measure overall survival if not enough years have passed to see if one group has lived longer than the next.

New data is coming in all the time though, and we may all be pleasantly surprised by what it reveals regarding treating now vs. waiting until later.

With all of that being said, Kermica has always made a very, very strong point. Active observation (I hate the term watch and wait) gives him a great deal of independence and quality of life. His "noise" levels go up and down for sure, but he manages it like a professional. His disease is stable, and he is watching it carefully. I admire him more than you know. I have after all, been watching my disease since diagnosis in February. And there were days when I didn't think about it more than a few dozen times.

Thanks so much. My biggest hurdle is going to be balancing my family, work and cancer. I am young and strong. I truly believe I can beat this. We want to stay positive. I guess the biggest disappointment for me right now is the realization that I will have to deal with this till I die. I had been thinking that I could beat this and move on. No such luck this time. I am already glad I decided to come to this forum, I'm truly going to need to talk to people that are living it also. As time goes by I will know more on how to describe my specific cancer situation.

Just to let you know there is a 15% chance you will have a spontaneous remission. That is not a treatment option but it should give you lots of hope. Keep your level of fitness up it will help no end in beating this.

My first tought of the watch and wait treatment is not something I would be interested in at all. I lean more toward attacking it and getting the upper hand instead of letting it pop up before acting further. Time will tell what treatments they choose but I'm wanting to hit it hard and fast then monitor weekly/monthly/quarterly/yearly as time progesses.

Age 52
Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
Remission 2-17-2012
Rituxan treatments start 4-25-2012, once every two months for two years
Learning as I go.

Just stopped by to welcome you, I see our resident experts have already gone to work.

One thing I wanted to mention is that the Leukemia and Lymphoma society will give you a yearly grant up to 5,000 for insurance premiums, co pays, and meds. That would pay about half of your premiums, but hey, better than nothing.

Leukemia and Lymphoma Society Grant? Why me? I guess you have to meet certain requirements? Of course I could use it. My insurance is an 80/20 plan. So, I to have to pay 20% of all bills.

Update: First visit to an oncologist scheduled on Tuesday morning. Kinda worried.

Last edited by Bank Walker; 11-01-2011 at 02:07 AM.

Age 52
Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
Remission 2-17-2012
Rituxan treatments start 4-25-2012, once every two months for two years
Learning as I go.

Meet with Oncologist today. Set up a bone marrow and PET Scan for next Tuesday.
As of this time if nothing changes my first Chemo is scheduled for NOV 23rd. I had the biopsy surgery and this will be just over a month from that date to make sure I'm healthy enough. I'm still a little weak and sore from the biopsy. He said I'm lucky we found it when we did and more than likely it is in the bone marrow also. I thought we found it early because I did not have tumors. He said I have more that likely had this cancer for years. He said it could be as advance as stage 4. Based on a scale of 1-4, I would think if it is in stage 4 that is an advanced cancer which will need extreme treatments? Such as strong chemo, bone marrow transplants, radiation. misc. surgery? Everytime I see a doctor I end up with more questions than before. It is like a roller coaster. Extreme highs and lows.

Age 52
Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
Remission 2-17-2012
Rituxan treatments start 4-25-2012, once every two months for two years
Learning as I go.

I would think if it is in stage 4 that is an advanced cancer which will need extreme treatments?

Hi Bank and sorry for the roller coaster ride, we all experience it - especially in the early days of staging. I think your doc hit you as hard as he did because indolent lymphomas are notorious for being found late stage - very often S3 or S4. It is due to the slow growth rate and lack of measurable impacts. It does not mean extreme treatment, it means you would get the same treatment that anyone else moving into chemo with an indolent lymphoma would get. There are three possibilities B+R (Bendamustine and Rituxin, a single agent approach) which many feel is the developing gold standard for treatment, CVP-R (a chemo cocktail often used in Follicular as it reserves stronger chemo should it be needed later) or CHOP-R (the same cocktail used to treat the aggressive lymphoma, usually not used as a frontline treatment). If (no, when) I get to the point of needing chemo I will be pressing for B+R. It has been used for decades in Europe, appears to be as effective or more effective than the other choices with less toxicity.

The good news is that lymphoma in general responds very well to treatment, even at S4. We indolents have the curse of a likely return but treatment often results in what is called a complete response (CR) which means that there is no evidence of disease (NED) when completed. Sorry for the alphabet soup. Many times, the CR will last for years so that is the core objective. I know it is all scary and confusing. Try to think of your lymphoma as a chronic disease to be managed because that is what it really is...you need to finish the diagnostic process which is pretty much a go along to get along type of time. When that is over, your oncologist can speak from a base of knowledge about your stage. Even if you are S4, that changes little or nothing about your choices except that W+W is probably not a good choice for you (though plenty of S4 patients have used that strategy if there overall health is not being impacted). Hang in there, stay off the internet and feel free to vent or ask, as needed.

Good health,

kermica

When the world says, "Give up," Hope whispers, "Try it one more time."
~Author Unknown

Age 66
Follicular lymphoma diagnosed August 08, Stage 1
2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
Restaged to Stage 3 May 2010
Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
Significant progression detected in PET scan - December 2012
Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.

Your right on about some of the stuff we talked about today. He said it was a disease that had to be managed just like diabetes or high blood pressure for the rest of my life. We discussed Watch and Wait and how some people might want to follow, depending on the stage it was in and thier general health.. I am healthy overall. I do not drink or smoke. I'm not over weight nor am I on any medications. I excercise regularly and seldom get a cold in the winter except when I get a flu shot. Kinda ironic to get a cold after taking a flu shot, ain't it.

Anyway, my initial response to a W&W treatment is not something I am interested in at all. I told him I was more interested in attacking it. He said that we could try to knock it into remission and monitor the cancer as needed as time passes.

Overall I was very happy with the oncology visit. The nurses were nice and very helpful. They asked if I had a cancer policy. When I said I did and gave them a claim form they took it and said that I had enough to worry about that they would handle getting everything needed sent in per the claim form. All I had to do was give them the claim number and sign the form. The doctor took an extra amount of time to explain all the upcoming tests and answered every question I had. He also helped cross reference his schedule with my work schedule to avoid my missing work.
I had several calls from co-workers and my boss today. The boss was very understanding and seemed to be bending over backwards to make my schedule and work as easy as possible during these treatments.

Age 52
Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
Remission 2-17-2012
Rituxan treatments start 4-25-2012, once every two months for two years
Learning as I go.